Well, if that title isn't clickbait, I am not sure what it is...but, it is true.
I was diagnosed with COVID-19 and am still fighting it off. It has now been two weeks.
My hope for this post is to inform without causing alarm, so it may come across as more factual, or even have a slightly different tone, than my regular posts.
I have been terrified for months how having this illness could affect my body being immunocompromised. Being as compromised as I am with multiple autoimmune disorders is what led me to the mandated medical quarantine on March 13th (which never expired, but I will get to that) earlier this year. Today I am going to talk a little bit about my experience with this virus so far, but before I go any further I want to be clear: right now I am presenting with a mild/moderate case and am doing well, all things considered. A mild case of COVID-19 is still an absolute nightmare (for both myself and my husband), but I am able to get well at home and have not required any hospital interventions. I also made the decision to wait to publish anything publicly until I was two weeks past when my symptoms started so that this post does not cause unnecessary fear for those who had not yet heard. I have been taking notes for myself as able and my husband has been helping with logging medications, symptoms, fluid intake, etc. which will be helpful in talking about the progression so far and what we have done to mitigate the consequences.
A quick summary of COVID: this is the worst I can remember ever feeling physically, excluding one or two surgery recoveries.
One of the aspects of this bear of a virus is that it has the potential to affect so many disparate systems in the body...no two cases look exactly alike. Many cases look as though they originate from completely different ailments. Originally it seemed to be a primarily pulmonary disorder. We now know that it easily can be a GI/stomach illness. It can cause enlargement of the heart and affect the central nervous system. It even can present as an allergic reaction or rash on the skin. There is no one system that the coronavirus chooses to primarily implicate in every person. This is one factor that makes it so scary. What systems will this affect for me? Would I rather it affect a system that is already a little compromised, or potentially compromise a whole new system in my body? How do I keep it from compromising more weakened systems in my body? What will the lasting problems be, if any? These are all thoughts that have been swirling around in my head amongst my other fever dreams.
As I mentioned, I was mandated to a medical quarantine at home on March 13th of this year by my doctor in conjunction with CDC guidelines. When I asked about the duration of this quarantine I was told that "until the virus was contained" I would be under a protective quarantine. The exceptions of leaving my house included the following: going to see my doctor, picking up medications at a drive-through pharmacy, and allowing me to see my mother once she had set herself up in a similar protective quarantine for a duration of time.
When people complain about being "quarantined" to their homes, but can still walk their neighborhoods, it makes me mad. I was allowed in my backyard, but was not even allowed to go for walks. Hearing others complain about wearing a mask to protect others made me even madder--such a small measure to ensure safety when I felt like I was being put under house arrest. I need to remind myself regularly that comparing is not fair to anyone in this situation that none of us asked for...and also, I am allowed to be mad. It's day 158. While my orders have not, and will not for the foreseeable future (because we do not yet know if this virus can be caught a second time), expire...they did change.
As the curve flattened over the summer in Ohio with a "safe-at-home" order, mask mandates, and improved social distancing, I was allowed to start walking outside again. I was granted permissions to see people if we socially distanced with extra regulations. Some examples of the extra regulations included requirements like needing to stay outdoors for the duration of the visit at more than six feet with everyone wearing varying levels of face coverings.
This has been so hard.
I miss my family and my friends--I feel very lucky to have a kind, supportive husband willing to follow the same orders to stay in the same place with me and a dog who brings me joy on a daily basis. But this kind of isolation has been one of the saddest and loneliest times in my life. And yet, we stuck to the rules.
But still, the virus found me.
So let's talk about the virus...my symptoms began to manifest on July 31st to August 1st. From July 31st to August 2nd I experienced head-splitting migraines like I did after my traumatic brain injury. I have not suffered from headaches in a couple of years now. While I thought it was weird, I certainly did not jump to coronavirus as a cause.
The night of August 2nd going into August 3rd I woke up in the middle of the night with the sheets soaked, feeling a little disoriented, and very, very feverish. My rustling the sheets and rolling over woke up my husband who felt my forehead and cheeks and immediately went to get the thermometer. I had gone from no temperature going to bed (or at least not feeling one) to a temperature of 103.2.
As I write this, my fever is lower, but still has not broken. I am exhausted.
That same day we contacted my doctor as soon as the office opened. In addition to a high fever, I had began to feel nauseated non-stop and starting to experience some pretty impressive GI issues. I will leave that where it is for everyone's benefit. The weirdest part of the whole thing though was what happened when I was trying to drink fluids. As I took the Gatorade that Alex gave me I almost spit it back out because it tasted like straight apple cider vinegar mixed what I assume mulch tastes like. Since I was losing a lot of fluids and my blood sugar kept dipping down without me wanting to eat, I had the same reaction to juice, popsicles, etc. Everything either tasted like vinegar or (again I am using my imagination here) like dish soap. COVID tests were ordered for both me and Alex. We would be waiting on results for a long time.
With the help of my practitioner, we established a medication routine and a twice daily minimum vitals check to make sure we were good to be staying at home. Thankfully our house has already seemed like a back-up pharmacy for some time so we did not need to leave to get any equipment. In the morning and evening, I use a spirometer, which is that thing you blow into or suck air out of, to measure your lung capacity and also to expand it. With my lung collapse earlier this year we were already familiar with how to use one. In addition to the spirometer, we check my blood pressure with a home cuff, my oxygen saturation (the amount of O2 in your blood) using a pulse-oximeter, and of course a temperature checks, though those are more frequent. So far, so good--or at least good enough to not need other interventions yet.
August 4th I felt much the same as the day before, but was starting to get really, really drained despite drinking 1-2 liters of water. I started experiencing typical fever symptoms but in a more severe way than I am accustomed. My muscles cramped, there were near-constant chills, and no position "felt right." By the end of the day I was starting to have that sensation of crawling out of my skin.
Over the next few days, my fatigue grew so bad that I would nod off while Alex was talking to me, although he was always able to wake me back up. I spent 12-18 hours a day sleeping/napping and was frequently confused by what time of day it was and repeatedly asked for the date. Alex and I talked with my doctor via telehealth and she gave him the signs to watch out for if I needed to be admitted to the hospital, but called it a "wait and see" to try and keep me in a comfortable, less exposed environment if possible. Have I mentioned how much I love my PCP?
Even now writing this, I have huge blank areas where I have no sense of what I did during a certain day or who I talked to or about what. Thankfully, the memory lapses and confusion started to improve a lot around August 10-11th or so and are still going in the right direction.
What we did not think about at the time was how much water I was drinking without eating any food and struggling to tolerate any kind of drinks with electrolytes. Although I do not remember this, Alex assures me that the moment he could tell my thinking my clearer was when I asked for salt and vinegar chips, thinking that they might not taste as "wrong" as other things if they are meant to taste like vinegar.
Apparently, I ate an entire family sized bag at 4 a.m.
Since then, we have been very carefully administering some extra potassium orally and providing food and drinks that will allow ALL of those good things--sodium, potassium, magnesium, calcium...you get the gist...to get rebalanced. Again, doctor signed off on how we were managing it and I have continued to have this weird sensation of "eating this FEELS so good" rather than necessarily "tasting good." I do like when they overlap though!
In thinking about some of the really minor symptoms, I asked my doctor if I could be having an allergic reaction because my ankle and toes were incredibly itchy with no visible, typical summer bug bites. She asked if that was the only place I was itching and told me that with the cluster of symptoms that goes with GI issues, people have frequently reported "COVID toes" that itch and itch and itch and itch-they itch a lot. Also...COVID toes? Is nothing sacred anymore? Again, thankfully there are some remedy OTC medicines I am taking to minimize the mild discomfort from that silly symptom.
The past week from the 11th-14th my symptoms have shifted from GI to be more pulmonary. I have developed a cough that is not too bad, but my chest does feel tight and is eased with an inhaler. We are keeping an eye on it as we continue to play whack-a-mole with all of the shifting symptoms, but understanding that some are more serious than others. While I feel incredibly optimistic that we will be able to manage the duration of this at home, I am not taking it for granted and have a bag packed in case we need to go to the hospital quickly with lists of my medications, emergency contacts, etc. We have spoken with the hospital where I would go and understand their procedures. I seriously doubt I will need it, but hey, prepare don't panic, right?
After several days of waiting for the test result (to be fair, it was the weekend) we received our results from the COVID test we took which read: NEGATIVE. My doctor immediately looked at the type of test that had been given and it was the "rapid" antigen test which she described as being "less accurate, especially early in the course of symptoms." She also said that regardless of a second COVID test I would be taking that she had labeled me as a presumptive case for the ODH unless we got a positive result on the follow-up, which she doubted we would, based on the timing for that test. When my symptoms abate, she has ordered antibody testing at my request, both to verify that I had COVID and also so that I can donate my plasma to others who are suffering with this virus and are not as lucky as I have been with my symptom progression. One of the most jolting moments was watching the DeWine briefing, knowing I was a number in the statistics slide.
Currently, I am managing my shortness of breath and fatigue by just resting, resting, resting. I can't believe it, but I do still have a fever so am still drinking varied fluids throughout the day between 1-2 liters, even though it is an effort to just lift the cup. Every movement from typing on my keyboard to opening my eyes is a conscious action that I would usually do without even thinking about it. Everything aches and it is still hard to find comfortable positions, but slowly we have found a couple through trial and error. I am also really ready to be able to drink my favorite diet drinks (I know, allow a girl this one vice though!) without feeling like I have to gag. Those I can't do. At all. Just soapy, sudsy water, even though we test it once a day to see if my taste is returning to normal at all on my favorite things.
I am so grateful to my partner for helping me, and grateful for my partner since he has been asymptomatic. We were specifically instructed to quarantine together since we have been literally living in the same house and staying put on the same protocol.
My temperature still spikes if I miss taking Tylenol every four hours (even in the middle of the night) so we have been keeping strict notes on what I take when. My doctor and my mother both recommended immediately starting Zicam, which anecdotally has helped patients have less severe cases. These rapid melt tablets are administered every three hours. I was taken off of ibuprofen right away as that seems to correlate with worse long-term consequences, even though it has meant having more fever symptoms. If it means better long-term health though, it is worth it, no question. Every hour I have a certain amount I need to drink and if I fall asleep for a couple of hours, Alex will wake me up, make sure I drink what I need to, and then I go back to sleep.
So the big question here for all of us has been: how did I possibly get this with all of our precautions? Well, here's the thing. This virus is still so scientifically new. The protocols are, and I borrow a quote from a favorite movie here, "more like guidelines than actual rules" as far as how my body reacts to them. Science is imperfect and ever-evolving as new best practices are found and replace old ones. That is how science is supposed to be. Also, not even close to everyone currently practices the protocols perfectly. Or at all.
The week before I started displaying a symptoms I spent about three hours in a doctor's office and even though everything is cleaned in between patients, it is so easy to miss a small spot here or there if the practice is running behind and trying to get to everyone. I had a socially-distanced visit with a friend who I believed had been social distancing. I asked her all of my standard questions through our front door when she surprised me on our doorstep since I did not know she was coming. Even though we were thorough and all wore masks, were outside etc. she realized that her new roommate had been near several COVID positive people because she is an EMT, but we had already been visiting for a good 30 minutes. My best guess is that is where I caught this, but truly...I don't know.
What I do know is this: there is evidence that wearing a mask protects the person you are talking to or walking by. The person wearing a mask and walking toward you is protecting you. Staying two meters or 6+ ft apart stops the spread of droplets that can contain viral matter. These interventions work to slow the spread and I stand by them as the best practice guidelines we have even though I still got sick. Science isn't perfect--and neither are people. But science is good--and so are people. When we use the tools we have been given we minimize our chance of catching or passing this virus along to others.
Continue to wash your hands to the best 30-second song chorus you can sing in your head.
Continue to wear your mask, and even add a face shield if you are able to do so.
Maintain distance when in public areas and be respectful of people moving slower than you.
Seek out best practices for the community you live in and follow the rules.
Please.
My doctor has reiterated that since I have not been around anyone except my husband without wearing a mask for the entire time, it actually helped. New studies are finding (and I realize this may sound like common sense) that if you wear a mask, you encounter fewer viral particles, which usually makes for mild or moderate case, not a severe one. You wearing your mask, and me wearing mine, may be the reason I can get well from home. Thank you.
I cannot restate this enough times: this virus is not the flu. In fact, in high school I caught H1N1, also known as "swine flu", and this is so. much. worse.
With careful monitoring we are saying that we are in an "awful, but stable" place. I have honestly never, ever felt this utterly exhausted in body, mind, and spirit. This post has taken more stop-start breaks than I thought it would. And likely, I will go to sleep after this, and wake up in earnest tomorrow around the same time. But it is worth it because I want you to know where I have been. I have just a couple parting thoughts if you take anything away from this blog:
There are people forced to stay in their homes and we may have been here as long as March with no end date--and we do it to protect ourselves and our communities. Please, reach out to us and know that a virtual talk with you might be the only thing on our calendar.
This virus is relentless. This is a mild case and we had at least two nights talking to my doctor at 2 a.m. about whether a hospital admission was in order.
Following CDC and local guidelines protects you and the people you love.
I am never not in pain and exhausted. This. is. not. the. flu.
When I wake up, my first thought is that I want to get better so I can donate my plasma to others in need if that will even make the smallest difference in someone else's recovery.
Please feel free to e-mail and text me. Know I read all of them. Sometimes I forget to respond or take longer than usual right now, but know that you honest to God made my day by sending a message.
I am hoping to be posting more soon, but for now, it's back to the couch to keep kicking COVID's butt...okay pillow, okay blanket, let's do this.
Prepare, don't panic,
-Allison
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